Discussions By Condition: I cannot get a diagnosis.

Help Us, Please

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • March 10, 2007
  • 02:26 PM

I want to tell our story because more than year my child (only 2 years) and me're suffering from unknown disease and I don't know what to do and where to go. I'll be really thankful if someone can help or give an advice. Please excuse my English, I'm from Eastern Europe and it's hard to explain all this medical terms.
I'll try to explain our state, our medical tests and egzaminations.
I 've always been a generally healthy person untill 2003 /one year before
I got pregnant/. I think the story of our illness began than when after a flu I couldn't recover. During 5-6 months I had intensive night sweats, every day temperature 37.2 C-37.7 C, sudden blushes, muscle and joint pain, nose discomfort and secretions, ressembled allergic rinithis, a limph node on the neck, pale face with dark cirkles under the eyes, swelling of the outlet of the salivary gland in the mouth (one of the very first sympthoms), which stayed for 5-6 months. I made tests for many viruses, parasites, tuberculosis - all negative. Microbiology of the nose secretions was normal. Autoimmunity disorders were rejected. My blood tests were normal, the only indicator of inflammation was in plt 450-500. I hadn't cough but the X-ray of my lung looked strange. There were doubts about intersticial pneumonia. I took withought result 5 antibiotics - Cefalexin and Duracef for the flu, Rodogyl for the nose sympthoms, Doxicyclin, Zinat and Klacid for suspected pneumonia. Seeing the doctors could't work out a diagnosis, I decided to go on a long holiday, then returned to work and with the time I got better and completely healthy again. Comletely exept my nose problems and appeared lips and mouth ulcers.
My daughter was born a year later (october 2004). On the 3-th day after birth (after BCG vacsination) I noticed she had nose secretions just like me, which have always been a serious problem. Microbiology of secretion has always been normal, Ig E for allergy too.
When sher was nearly1 years old, a month after a virus infection I noticed an occipital big lymph node and for 4-5 months temperature of 37.1-37.2 C at lunch time and intensive night sweats.
In February 2006 my daughter again had a flu and couldn't recover. The permanent symptoms were of low fever (up to 37.7 degrees), night sweats, new swollen and painfil lymph nodes behind the ears, 5-6 months later nodes on the body too - under the armpit and legs, swelling of the outlet of the salivary gland /may be the first symptom when she looked healthy/, pale face, dark circles under eyes, mouth and lips ulcers. Since May 2006 she has very often strange feces like diarrhoea. Since September 2006, she has had pink eyes, feeling of sand in the eyes and pain in the joints. She has 2 white spots in her body and I think there's a tendency to appear another one.
My daughter was treated with Cefzil, Augmentin, Clindamicyn, Sumetrolim, Doxicyclin and Isoprinosin, they didn't help.
Since June 2006 have no doubt I'm sick from the same disease like my daughter and like me before. The same sympthoms - swelling of the outlet of the salivary gland in the mouth, fever 37.2-37.3 C, muscles and joint aches, little red throat and ears /in the beginning/ and sudden face blushes. Two months later the first lymph node on the neck appeared, four-five months later I developed the enlarged lymph nodes behind the ears, the same strange feces, eye sympthoms, muscles and joint pain, small lymph nodes under the armpit and legs, feeling of needle in my body and from January of small knives under skin and a small hole on the hand under the skin appeared /the doc. said I miss fat tissue on the same place/. Feeling of the sunburned skin mostly on the face, back and hands, a pink-brown spot on the hand, and thick fingers with hard movement especially in the area of the joints. My mother begin with the same sympthoms. My husband complained sunburned skin .
This "strange infection" made us spend the last year in making tests for
many infectious diseases, we investigate Adeno viruses, Enteroviruses and
Coxsackie, EBV, CMV, HIV,Parvovirus B19, HBsAg, HCV, syphilis, Yersinia
Enterocolitica, Brucellosis, Tularemia, Erlichia, Listeria, Leptospirosis,
Micoplasma, Chlamidia psitaci, Chlamidia trahomatis, Toxoplazmosis,
Toxocarosis, Trihinelosis, Ascaridosis, ASLO titers, Q fever, Candida,
Aspergilus, "Quantiferon" and TB spot tests for TB but the results were
all negative.There were results concerning my daughter's cellular immunity and NBT test (nitroblue tetrazolim test, which measure fagocytic activity) that were not normal - 47% and made two doctors /heamotologists/ doubt it was a rare
chronic granulomatous disease of the childhood. I sent to a professor from Immunodeficiency Center in Berlin, my daughter's tests results who said my daughter doesn't have primary immunodeficiency and she is ill from disease that suppressed her cellular immunity.
We investigate tuberculosis infection, because my mother and I had had possitive skin test for Micobacterium Bovis (20 mm and 10mm)a. But all the cultures (sputum, feces, urine and blood) and TB-spot test and Quantiferon test were negative for micobacteria. We made a CT scan of the lungs and the abdomen and all were normal. But we had a month treatment for tuberculosis (Tubocin, Etambutol, Isonid) untill we were waiting for all the results for TB and I saw it help but not enough.
The specialist of patologyc anatomy who egzamin my node told me I have something that looks like vasculitis, but unknown for him and probably seconday. I don't have autoimmunity disorder (my ANA, ANCA and Anti-Sm/RNP tests are normal). The second specialist told me we could have disorder in the phagocytic system, something with macrophagies. The third specialist doubts about micobacteria.
Here are their descriptions:
> 1.Slightly enlarged lymph node with preserved structure. The lymph
follicles and the sinuses are outlined. The cellular composition consists of
> lymphocytes, scanty plasmocytes and epithelium-like cells. Certain
> proliferation of blood vessels is witnessed, some of which are with
> thickened wall. Capillaries are witnessed with hyalinized walls and
> partially or fully obliterated lumen.
> CONCLUSION: The most significant witnessed changes are of the blood
vessels, which gives reasons to consider vasculitis with hialinization of small
> vessels with no recent inflammatory alteration of the walls. The finding
> does not allow for nosological definition of the process.
> 2. The observed picture in the ready-made preparations and in the
additional sections and the special staining (Perls, van Kosa and Cil-Nilson) gives
ground for evaluation as a reactive process. There is certain restructuring
of the lymph node architectonics with development of many secondary lymph
follicles and considerable monocyte-histiocyte proliferation with expressed
> phagocytary activity (haemosiderin, calcium, protein matter, and at some
> points-erythrophagia. There is slight hyperplasia of the post-cappilary
> venules. Some vessels are with expressed celless sclerosis and resemble
> Hasalian bodies. The node capsule is fibrously thickened).
> The finding ressemles changes typical for dermatopathic lymphadenitis. It
is desirable to look for deviations in the monocyte-phagocytic system
> (immunological and cytological) and if other larger lymph node is
available, second biopsy test should be undertaken.

> 3. Preserved structure of the lymph node with observed vasculitis.
Affected are small and medium-sized blood vessels. In the special microscopy
staining (Aurin-Rodamin) in these vessels are seen moderate number of objects
shining like micobacteria.

> At the end I want to summarize our test results:
> 1. suppressed cellular imunity (T- and B -limphocytes and NK, CD4/CD8 always more than 3,2 more than twice upon the normal range),
> 2. not normal proliferation of T-limphocytes, not responding of stimulation with gamma interferon, interleukin and others
> 3. possitive NBT - test/few times, the last is normal/,
> 4. twice positive skin test (mantou) for M. Bovis in my mother and me
> 5. negative blood tests (Quantiferon and TB-spot) for tuberculossis,
> 6. possitive PPD for M.Bovis and M. Tuberculosis,
> 7. normal blood tests (exept evaluated PLT- about 500),
> 8. normal CRP (C-reactive protein),
> 9. evaluated circulizing immunity complexes for a long time
> 10. my daughter has evaluated CPK and FFAA.
> 11. normal scan of the lungs and abdomen
12. Normal immunoglobulines

Our permanent sympthoms are:
> 1."Needles" under the skin of the whole body and fat tissue missing,
> 2. Painful lymph nodes on the head (on the neck and behind the ears) and
on the body - under the armpit and legs,
> 3. Temperature between 37.2 C- 37.7 C (in me and the child),
> 4. Pale face with dark cirkles under the eyes
> 5. Pink eyes, sympthoms like conjuctivitis, feeling that you have sand or
> soap in the eyes and small blood shots
> 6. problems with nose mucosa and secretions
> 7. after the 6-th month of the begining changes in feces (often something like diarrhoea)
> 8. Mouth and lips ulcers
> 9. Sudden blushes of the face
> 10. Slow pain in the joints and bones
> 11. Pain in the muscles
> 12. Thick fingers of the hands and hard movement in the joint area
> 13. Dry and sunburned-like skin
> 14. Pink-brown spot on my hand (from 3 months now) and 2 white spots
> on the child's body (one of them is not small white area).
15. Pink-violet areas on the skin of the finger's joints on the hands
16. very, very small white round spots on my mother's hand.

Thank you in advance,

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9 Replies:

  • Sorry you are going through so many problems. I didn't notice you mention Lyme disease or co infections like babisea, bartonella, borriella, etc. Its possible that your dau was infected when you were pregnant. Lyme bacteria hides all over the body, not always found in bloodwork. Most drs don't test for it, when doing normal blood work. Your discription sure sounds like it to me. Try this site, maybe you will find your answers here lymenet.org. I hope you find out soon so you all can feel better.
    Anonymous 42,789 Replies Flag this Response
  • Yersinia enterocolitica IgG/IgA Westernblot and ELISA test anti Yersinia IgABy what method to you did the analysis?e mail?
    Anonymous 42,789 Replies
    • January 27, 2008
    • 03:29 PM
    • 0
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  • Hello, I have read your post and I feel so bad for you as I have already walked the path you are on... I was having similar/same issues for a long time. Like you, mine happened after a severe flu. Ask your doctor to test you for mycoplasma and ureaplasma infections. also, read this page... http://www.nexusmagazine.com/articles/mycoplasma.html They say mycoplasma can lay dormant for 10,20,30 years before something "triggers" it like a trauma, a flu or a recent vaccine. There is alot of info out there on mycoplasma. Here is a post on one of my threads that I posted a long time ago... The title page of a genuine US Senate Study, declassified on February 24, 1977, shows that George Merck, of the pharmaceutical company, Merck Sharp & Dohme (which now makes cures for diseases that at one time it created), reported in 1946 to the US Secretary of War that his researchers had managed "for the first time" to "isolate the disease agent in crystalline form".3 They had produced a crystalline bacterial toxin extracted from the Brucella bacterium. The bacterial toxin could be removed in crystalline form and stored, transported and deployed without deteriorating. It could be delivered by other vectors such as insects, ( such as ticks)aerosol or the food chain(cow's milk and meat) (in nature it is delivered within the bacterium). But the factor that is working in the Brucella is the mycoplasma. Brucella is a disease agent that doesn't kill people; it disables them. But, according to DR Donald MacArthur of the Pentagon, appearing before a congressional committee in 1969,4 researchers found that if they had mycoplasma at a certain strength -- actually, 10 to the 10th power (1010) -- it would develop into AIDS, and the person would die from it within a reasonable period of time because it could bypass the natural human defenses.If the strength was 108, the person would manifest with chronic fatigue syndromeor fibromyalgia. If it was 107, they would present as wasting; they wouldn't die and they wouldn't be disabled, but they would not be very interested in life; they would waste away. LISTEN UP PEOPLE, THIS IS A DOC...FROM THE PENTAGON...TESTIFYING BEFORE A CONGRESSIONAL COMMITTEE!!!!!!!!!!!!!!!!!!!!!!Most of us have never heard of the disease brucellosis because it largely disappeared when they began pasteurizing milk, which was the carrier. One salt shaker of the pure disease agent in a crystalline form could sicken the entire population of Canada. It is absolutely deadly, not so much in terms of killing the body but disabling it. Because the crystalline disease agent goes into solution in the blood, ordinary blood and tissue tests will not reveal its presence. The mycoplasma will only crystallize at 8.1 pH, and the blood has a pH of 7.4 pH. So the doctor thinks your complaint is "all in your head". HOW MUCH MONEY IS MADE EVERY YEAR IN THE PSYCHOLOGY REALM?SOMETHING TO THINK ABOUT... You should also look into NAET. It is a form of accupressure that relieves "allergies".... allergies happen with "autoimmune" diseases. Your body is automatically building antibodies to things it shouldn't. I have had 12 BioSET sessions and I am now back to work. I was told I would never be able to work again. I stopped waiting for the docs to fix me and found a way to get well. I actually recieved the information on NAET/BioSET from someone here in this forum. Without their advice, I would still be very ill. he4re's wishing you the best..... mommy cat:)
    mommy cat 1,654 Replies
    • January 28, 2008
    • 03:45 PM
    • 0
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  • Me again... You said you are located in Eastern Europe but didn't specify where... Here is the NAET link for Europe :) Best wishes, mommy cat
    mommy cat 1,654 Replies
    • January 28, 2008
    • 03:48 PM
    • 0
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  • http://www.naet.com/subscribers/dreurope.html Stay well and stay informed... mommy cat
    mommy cat 1,654 Replies
    • January 28, 2008
    • 03:51 PM
    • 0
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  • But the factor that is working in the Brucella is the mycoplasma. ????Excuse me
    Anonymous 42,789 Replies
    • January 30, 2008
    • 09:24 PM
    • 0
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  • If you are all living together and experiencing similar symptoms then it may be something in the environment causing these problems. You might want to look into getting your house tested for heavy metals or other environmental toxins.
    Anonymous 42,789 Replies
    • January 31, 2008
    • 01:33 AM
    • 0
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  • I wonder if you have considered something genetic as the same problems seem to affect your family...
    aquila 1,263 Replies
    • January 31, 2008
    • 05:05 PM
    • 0
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  • Me again... You said you are located in Eastern Europe but didn't specify where... Here is the NAET link for Europe :) Best wishes, mommy catHey mommy cat, i would like to contact you and share naet experience if that is ok?
    Anonymous 42,789 Replies Flag this Response
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